Reflective Journal 6 - Discovering Disney

 In October 2003 David was given a holiday to Disneyland in Paris as he had not had a proper holiday in over 10 years. To anyone else this would be a dream come true but to David it was just a holiday away somewhere as he had no knowledge of Disney and the reputation that surrounds it.

David had a friend that had been previously and told him that it was no good, so David had it in his head that he would not like it and he wanted to pay himself and go to the Isle of Wight instead.

I was unaware at the time that it would be me that would be taking him, but it was my job to convince Jimmy that he would like Disneyland, but where do you start with something so big. He had no memory of any Disney films, or Mickey Mouse, he had also never been on any rides.  Luckily I had been there before so with memories, and a local Disney shop I started to tell David the story of Disney.

I had 3 months to teach David what I think was appropriate and useful information for him to aid his first visit.  I broke it down into different parts such as travel, money, food, daytime, night-time, characters and rides. And I worked on 1 at a time. .One of my main concerns was the characters as there was a risk that David may think they are real, so using costumes I explained to him how it worked and how the children would think they are real.

I also showed him various toys in the Disney shop and built up the stories a bit at a time, explaining that they were just stories for children and were not real.

I remember telling him about various inanimate objects that walked and talked and he got very confused.

I use toys a lot in my work as they are great tactile objects of reference and sometimes the only way that you can access a certain object. Once again a lot of criticism often comes from this due to toys being non age appropriate. But I feel that if they help the situation and David knows that they are just a child’s toy for him to feel to help him get a picture or a better understanding then in my mind there is nothing wrong with that.

Despite there being a lot to cover I believe I managed to inform David of the necessities which enabled him to have a better understanding and also give him lots of brand new experiences to look forward to although I often wonder what pictures all of this information I was feeding him was making in his head as a lot of it was new and very abstract to him and he would not really understand a lot of it until he had experienced it.

For instance telling him he would be having a ride in a tea cup made him laugh so much, and he questioned me by asking how would we fit?

I believe that if a description can be followed up by an object of reference it always helps and clarifies the information and helps put it into some sort of perspective.

After David had experienced Disney for a day he was full of questions and I found myself interpreting various stories about characters that we had met through the night as he kept waking up and wanting to know more.

With regards to rides we started small and worked our way up, when we reached one that David was uncomfortable with then I did not try anymore and we kept within our limits.

Speed and height was not as important for David as it may be for us when choosing a ride, it was all about the movement, we found ourselves going on the haunted mansion several times, although slow,  the seats, moved around quite a lot and David loved this.

Reflective Journal 5 - Interpreting strippers

David and I were asked to attend an awareness day at the royal institute of medicine in London; this was done after I had finished working with him and as a friend.  It was a joint meeting with Sexual Health and Disability Alliance (SHADA) Disability, sex, relationships and pleasure.  It was entitled “Some answers to the questions every Health and Care Professional working with people with disabilities needs to ask”.

There was myself and David plus a gentleman named Dominic who is tetraplegic

And we were all there to do talks and demonstrations.

Dominic was first and his talk was entitled “What they never taught me at the spinal injuries unit: The multi-sensory experience”.  I interpreted this for David which he found very interesting as Dominic was completely paralyzed from the neck down.

Then it was our turn we worked with a lady called Solitaire who is a stripper.  She performed on stage whilst I interpreted for David this in itself was one of the main talking points of the event and I was constantly telling David how important what we were doing was. There were hundreds of medical professionals from all over the world who had come to see this and learn from us.

I had to voice over on this occasion so that everyone was able to hear what I was signing to David; this was very unusual as I normally just sign. I have learnt from previous experiences to use the correct medical terminology for body parts when I am interpreting as any slang will not be understood and could be misconstrued such as certain words for female genitalia whereby David enquired why she would have a cat with her.  When I interpret a stripper for David, it is a job like any other job and I am there purely there to relay the information. I am not there for any other reason

This is something that I introduced to David and gave him the choice if it was something he would like to access. We work with 1 particular stripper, who knows and understands the situation very well, and will drop or drape her clothes on David as they are removed. David is not allowed to touch solitaire directly but she will often cuddle him, or drape her hair over his lap.

During my 8 years of working with David we had worked through a sense programme covering sex education and have slowly built up his knowledge about this subject – whilst at college David was taught how to cope with living with his disability and sex education and life skills with people was sadly pushed aside so this meant that he had never really had any teaching about these subject matters until he was in his 30’s.

David really loved to learn and looked forward to our weekly sessions which lasted a year to cover the necessary units and then due to David wanting to learn more they was carried on after as well

After finishing working with David I have kept in contact with him as a friend which has been a great as it has meant that I am able to do more with him as a friend than as a worker as there are fewer barriers in place.

I am very proud of the work that I do with David based on sexual awareness as it is so important yet it always seems to be such a frowned upon topic. People will continue to have their views on what I do with David but he is an adult and is fully capable of making his own decisions. He has been made fully aware of how people view this topic but he does not care as to him it is female company – and nothing more.

Reflective Journal 4 - Krispy Kreme

In 2011 David and I were invited down to Kent to learn about doughnuts.  David had asked me previously how doughnuts were made and that he knows that they only make jam ones. I told him that they make many different flavours and shapes of doughnuts and this prompted me to write to Krispy Kreme, and to my surprise we were invited along to one of their branches at blue water shopping centre in Kent to learn how doughnuts are made and to sample some of the different flavours. I only wrote on the off chance that they may send us some vouchers and had no idea that we would be invited to a Krispy Kreme that has a working kitchen.  Especially considering that the visit would involve me taking David who is both Deaf and blind. I had visions of all sorts of problems but I tend to forget that David is very gentle and careful and luckily no such problems occurred..

The day was amazing and it was very rewarding to watch David get so much out of it.  It is fantastic how something so small and insignificant created this whole day of learning, which also involved taste and touch and everything needed to stimulate David. We were talked through the entire process on making doughnuts from start to finish, David also got to feel machinery and they also let him decorate and fill his own doughnut.  Like many people David learns best from doing, as touch is involved.

Where there is just talk and instructions things get too complicated and it becomes very hard for him to digest the information. So this day was ideal as I could tell him the information and then it could be backed up immediately with feeling the object, or even tasting it.

It also reminded me how careful and aware that David can be. The thought of going into a reasonably small working kitchen with machinery and hot ovens was at first very worrying but David was amazing and adapted so well.

The day taught me that as long as it involves either touch taste or smell that David will be interested and engage, he may not necessarily like what he is doing but he will take in the information in that you are giving him and he will process that and bring it up at a later date – I think he is unaware that just because a topic may be grown up and serious, that it may not be boring, and that it is ok to be interested. But if any topic is relayed in a certain way that he can relate to he will learn without realising.

David was told beforehand that we would be going into a working kitchen and that the shop was open and there would be other people about working but this was not a problem in the slightest, he was careful and quiet and very inquisitive.

And the rest of the day he was asking questions about doughnuts and constantly telling me about what he had seen and felt.   This is his way of reassuring he has got the information correct

Reflective Journal 3 - Discoveries

 I am often an amazed at various occurrences that happen when I am with David as he is a person like you and me but, due to his lack of access, there are so many things that are alien to him. These things that he does not know about can be often be from one extreme to another for example when I started working with him in 2002, for whatever reason, he had never heard of marmite or peanut butter. As silly and insignificant as that may be it is all of the little things that make up a large part of our lives, and daily routines and enable us to have a wider variety of choice

Think about how much we can learn just by watching and listening, David has not got that.  He will also be unaware of how he is coming across as he cannot hear other people speak and therefore can appear very blunt and maybe even rude.

He was able to see until he was 18 but sadly he remembers very little from back then.  Some of the discoveries that he makes can be fun and beautiful to watch where others can be shocking as most of the time I automatically assume that it would be something that he would know. I have listed 2 discoveries below that were very memorable, and what effect they had on David.  Each discovery to me is a very special moment. Although to most of us they are not important and we just accept it but to David they are almost like magic and become an event.

1. Automatic Taps

We found some automatic taps in a service station when we were away. There were no on or off, you just put your hands under and on they came. David was very confused and spent some time looking for handles – he then called me to ask how they worked.  David then spent the next few minutes putting his hands under the taps and pulling them away again quickly as the water came on and off.

David was only aware of manual taps until then, and from this he learnt the word automatic.

2. Key Cards

Once again whilst we were away we were given a key card to our hotel room.  This was all new to David and he thought at first that I was joking when I showed it to him; he thought it was a bank card.  Getting the card in the slot proved to be a bit of a mission for him, but it didn’t take David long. Obviously David could not see the green light flash when the card went in and the door unlocked, so he would have to put his face up against the door and he would feel it click.

David lost his sight completely in 1987 so from then on his accessibility to everything stopped, so that is 25 years that David has missed.  This does effect things severely as he will still dress the way he did back then as he knows no different, he is unaware of new fashions, colours and styles and also what is publicly acceptable.  I remember going out with him to look for a new washing machine and he wanted to go to Rumbelows, he got very angry when I told him that they had all closed down 11 years ago.

Reflecting on this subject has made me realise that there is a far more important level of discoveries that occur that are beyond materialistic things, things such as religion, race and even disability.  Once again these are things that we could know as we can see – but without vision a handshake is just a handshake.  Also somebody who is called Chris may be a man or a woman, but David wouldn’t necessarily know unless he was told.

According to an article in U.S.A today

"It takes only three to five seconds to make a first impression, but it can take a whole career to undo it," - Dana May Casperson, author of Power Etiquette: What You Don't Know Can Kill Your Career.

USA Today

http://www.usatoday.com/money/jobcenter/workplace/successstrategies/2002-11-15-impression_x.htm

But David cannot form first impressions in the same way as we do they would be based on factors that do not involve sight and hearing. David refused to work with certain support staff due to various reasons, one was to thin, one had long hair like a horse, another signed to hard and another one was reported to have bad body odour.

These discoveries will continue to arise, some will come through questioning and some will just appear. This is very important as they need to happen spontaneously and not in a constructed way, this will leave natural breaks between the learning which will allow David to think and digest the information he has received.

Reflective Journal 2 - Planning a day out- The London dungeons

 The planning, delivery, assessment and review of learning.

This is an account of a day out with a Deafblind person to the London dungeons to enable him, through a variety of mediums, to learn about historical periods of time.

When planning an educational day out for David I take into account the transport and travel to and from the destination as we do not drive.  David is both Deaf and blind so 5 minutes for us is like 15 minutes to him.  Therefore I try to plan the route as straight forward and as quickly as I can. I also try to find something that David has an interest in or even something he has no interest in but is tactile and can be felt, as this may lead to a discovery of new interest.

From past experience too much signing and all talk does not work, there has to be an element of fun and touch and even smells if possible, this will hold David’s interest and will hopefully lead to further questions about the day later on.  If this occurs then you know you have been successful as what he has learnt will stay with him all day and will lead to many questions which are what I hope for as that tells me he has enjoyed the day and learnt something from it.

I interpret the surroundings and the noises that I hear, I break down the stories we are told into vocabulary that David can understand.  I use everything that I can to help me enrich the story such as relevant smells, touching props, weapons and any available objects of reference, this brings the stories to life and makes it easier to picture and understand for my learner. So much is learnt from seeing that we take so much for granted. Because of this I need to be aware that even the simplest of things can go missed for example, when relaying the story of the plague of London I can see that the conditions are un-sanitary where David would not.

I had visited before and therefore was prepared to some extent for the time restrictions on a guided tour as everything was on a 1 hour cycle so it was important to keep my pace on the tour without hurrying the learner.

All of the information that I passed on to David was broken down so it was very basic and could be understood without being an too much of an information overload.

I was originally unsure about the visit because it was quite a new genre of learning for him but the combinations of different resources used throughout the day to relay the stories seemed to be a great success and he learnt a great deal.

After the tour I asked him if he enjoyed the day and I could tell by the questions that he was asking me that he was interested and had been listening to what I had been telling him.

He later thanked us for taking him as he said he had really enjoyed learning about ‘old London’.

Reflective Journal 1 - Barriers to access

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 I have a friend who I used to work with who is Deafblind (both Deaf AND blind) I run a voluntary service which enables people with a dual sensory loss to access the world of entertainment and popular culture. I started this service in 2003 as I was inspired by the people that I worked with and their thirst for wanting to know and do more. My role is mostly as an interpreter and making sure that he has fully understood what I am telling him by whatever means that may take. He takes Deafblind manual which is a special kind of sign language where every word is spelt out onto his hand at 60 words per minutes but sometimes there are obstacles that take more planning and in order for him to understand. David was born Deaf and went blind at the age of 18 and he is now 43

.

He remembers very little from when he could see I have known him for almost 10 years so I know him very well but there will always be things that he is unaware of.

David’s main barrier is his lack of access to the world around him. This affects his knowledge of manners, people, behaviour…well everything really.

Having no sight or hearing means that he is only aware of what he already knows and what he is told.

The more I have worked with David the more I have learnt how to deal with various situations, what he wants to know, how best to tell him, which words he understands and which words he doesn’t as he has a very limited vocabulary .

I spent a long time once brailing him out some lyrics to some songs that was going to be sung at a concert which we attended. He could read them quick enough but was not interested. He just wanted to put his hand on the stage and feel the bass and enjoy the music So I no longer braille out lyrics as I have realised that I had assumed that this would have been useful for David but I was wrong. I also do not sign every word to a song as it will be information overload and songs to not relate very well i.e. (for instance  American pie – David would take this as to be a song about pies from America but in fact The song is a recounting of "The Day the Music Died" — the 1959 plane crash that killed Buddy Holly, Ritchie Valens, and The Big Bopper )I just tell him the basic song content and meaning – why they are singing and what about.

What is good about the failures is that they only happen oncem, then I learn from them so then next time will be better than the last.

My experience with David at the theatre has taught me what makes a great show where he is concerned, but it has taken me 8 years to get to this level.

We recently saw a show in London which David said was the “best show he had ever seen” which tells me that I am doing something right. The show was a Russian clown show called Slava’s Snow show and was incredibly tactile and interactive which meant that David was able to be involved in the story thanks to touch.

What is bad about it is if I fail to research the play/show properly something may crop up which may take a lot of explaining due to lack of understanding – which can be a problem as I lose the pace of things and miss what is currently happening.

So it is up to me to find out as much as I can beforehand then work on these things before the event so no extra explanation will be necessary during the day.

I visited Disneyland Paris with David and he had no knowledge of Disney at all – so my main concern that he would meet a 5 foot mouse, so I started by telling him about the fact that they was costumes and not real animals and as silly as this may sound to you and me it was something that he did not know. This will not be so with every Deafblind person as It will depend on when and how they lost their sight and hearing, and how much they can remember so each individual will work in a different way.

References

I found this quote which I thought was inspiring

To me it tells a story of confidence and assures me that I can complete whatever task I am given in my own personal way.

I am including it as I know that I work very differently from most people as I use a lot of alternative methods, because that is me and this quote reassures me to get acquainted with myself as I really am

Norman Vincent Peale (American Protestant Clergyman and Writer, 1898-1993)
One of the greatest moments in anybody's developing experience is when he no longer tries to hide from himself but determines to get acquainted with himself as he really is.

I found a schools project using a reflective journal – this helped me

And was written in a way that I could understand,  

The language was simple and straight forward

 http://centre4.core-ed.net/viewfile.php/18879/sharing/9/66679/10818   /ReflectiveJournalTemplate.pdf

Slava’s Snow Show website

http://www.slavasnowshow.co.uk/